PORTLAND, Ore. — The diagnosis felt like a death sentence.

Pam Dahl had just driven four hours to visit her adult son, Derrick, at the southern Oregon group home where he received round-the-clock care. A gaunt man with dark hair and blue eyes, Derrick Dahl, 35, was diagnosed in childhood with developmental disabilities that leave him largely unable to communicate.

During the March 2018 visit, Dahl’s mother recalls a caregiver saying in passing that her son had been diagnosed with a dangerous tumor.

Pam Dahl was shocked. She pressed for more information.

She remembered the caregiver saying her son’s tumor was discovered almost six months earlier but doctors thought surgery would be risky. Pam Dahl said she was told that the tumor could be deadly if left untreated. Doctors hadn’t scheduled Dahl for an operation.

Successfully pushing for a fresh examination of her son’s case led to another shock. A cancer specialist gave her hope Dahl’s tumor could be treated. She talked to a Portland doctor who was able to remove a baseball-size mass from Dahl during a November surgery.

“Somebody, somewhere, should have said, ‘You need to get a second opinion,'” Pam Dahl said of the care her son received. “You’ve just given this person a diagnosis of dying.”

Her effort to help her son highlights holes in a state safety net meant to protect vulnerable Oregonians who cannot advocate for themselves. It provides a cautionary tale for any family that lacks legal guardianship of a loved one who, because of a developmental disability, cannot make medical decisions.

The Oregonian/OregonLive spent six months investigating Derrick Dahl’s case to pinpoint why he didn’t see a cancer specialist until his mother stepped in. The newsroom reviewed more than 3,000 pages of medical documents, business filings, licensing records and state rules for appointing health care decision-makers for adults with developmental disabilities.

The investigation uncovered such profound flaws in the system that state officials scrambled to fill gaps as the newsroom’s inquiry was underway, writing new legislation in March to formally endorse the process for the first time.

Among the newsroom’s findings:

• Oregon’s rules to protect individuals with developmental disabilities are on shaky legal ground. Lawmakers never told the state Department of Human Services how people should be appointed to make medical decisions for vulnerable adults like Dahl, or what qualifications are needed to fill that role. The agency is now asking the state legislature to ratify its existing practices. But the state’s omission could leave it vulnerable to lawsuits from families who believe bad decisions were made.

• The department can’t quantify how many Oregonians lack a voice in their own health care. The Department of Human Services doesn’t track when medical decision-making is delegated because officials don’t want to collect the paperwork centrally. The state legislature approved money for a computer system six years ago, but officials spent it on other needs. Data is now managed across Oregon’s 36 counties through a hodgepodge of spreadsheets and sticky notes.

• Family members can be left in the dark. The person listed as Dahl’s appointed decision-maker as of December wouldn’t allow state or hospital officials to release his medical records to his mother. That decision-maker, like her predecessor, is a former employee of the nonprofit that manages the Medford group home where Dahl lives.

• Other potential conflicts of interest exist. Alternative Services-Oregon, the group home’s operator, has employed or contracted with five people who are part of the executive director’s family, including one identified in records as helping make decisions for Dahl. Board members own and earn lease payments from some Alternative Services homes in Oregon where people with developmental disabilities live.

The Alternative Services employment and rental arrangements are legal, and the nonprofit says interested parties were not involved in approving them. There is no evidence the family member involved in Dahl’s care approached the role differently than other decision-makers.

The Department of Human Services defended the state’s track record of care while acknowledging room for improvement.

Lilia Teninty, director of Oregon’s Office of Developmental Disabilities Services, would not answer questions about Dahl’s case, citing his right to privacy. But she pointed to a recent study by national advocacy groups ranking Oregon the second-best state in America for serving individuals with developmental disabilities.

“I believe Oregon’s system is better than other states’ systems,” Teninty said.

State officials similarly believe their process for appointing decision-makers is appropriate under current law. But prompted by the newsroom’s inquiries, Teninty’s office is pushing Senate Bill 1039 to “strengthen the statutory language” for making appointments within a system established two decades ago.

The legislation doesn’t create any new qualifications for medical decision-makers, nor does it say how much independent medical expertise should be enlisted in cases like Dahl’s. In fact, while the bill for the most part is a carbon copy of department rules, it removes any direct mention of a second opinion as a factor for decision-makers to consider in weighing a major medical procedure.

People with developmental disabilities are more likely than others to face significant physical ailments, according to a federal report. They also face bigger barriers to receiving preventative care and high-quality medical services.

Because Oregon does not track the number of vulnerable individuals like Dahl who are in need of a medical decision-maker, the newsroom did. The Oregonian/OregonLive contacted regulators for each county. Four refused to share figures while three others provided only estimates.

The newsroom survey identified at least 1,325 Oregonians with developmental disabilities who cannot make their own medical decisions and cannot appoint someone in their place.

For Dahl, the failure to pursue surgery earlier has resulted in a blame game.

It took a formal complaint with the state for Dahl’s mother to get him the medical opinion that led to his surgery. But the state also responded to the mother by revisiting her long history of being hard to contact. State officials told the newsroom that in general a complaint regarding failure to seek additional medical advice would not be investigated as a potential case of abuse or neglect.

Pat Allen-Sleeman, executive director of the nonprofit that runs Dahl’s group home, accused Pam Dahl of trying to exploit her son by talking to a reporter. She said Derrick Dahl had “nothing to gain” from an article being published.

The Alternative Services executive did not respond to the newsroom’s request to meet with Dahl and explain to him what this article would say.

“There is really no story here to tell, except misinformation, a dramatic self-serving version and an inaccurate and harmful story,” Allen-Sleeman said. “I know what we have done, and I know what his family has done or not done.”

According to Allen-Sleeman, Dahl didn’t see a cancer specialist because two doctors in Medford “denied” their requests. Providence Medical Group rejects her assertion, and Providence medical records do not show any refusals.

Providence, whose doctors initially evaluated Dahl, stands by the physicians’ work and says the decision to monitor the tumor, without operating, was appropriate given the risks posed by surgery and uncertainty about whether the tumor was cancerous.

Dahl’s mother said she has no intention of suing any of the organizations involved. She said she only wants to understand what she sees as a system failure.

“It’s just so upsetting,” she said. “I can’t believe this has happened, and I hope it hasn’t happened to other families.”

Childhood

Dahl’s mother was a few weeks shy of 20 when she gave birth in the spring of 1983. She tended tables at a restaurant in Yachats overlooking the Pacific Ocean. Her husband, Tom, worked for his family’s garbage disposal business.

Dahl almost died when he was just 8 months old, the victim of a high fever and severe seizures, his mother said. He stopped breathing one night, but an ambulance trip to the hospital kept him alive.

He likely had epilepsy, Pam Dahl remembered being told.

“And I thought that was the worst thing in the world, right?” she said. “But I wish it would have just been that.”

She soon realized her son wasn’t developing like other children. Dahl didn’t walk until 18 months. He didn’t talk.

When Dahl was 3, his mother finally accepted the fact that her son had a life-altering developmental disability. “It was pretty obvious,” she said. “You don’t want to believe it.”

Dahl’s mother recalled that period of her life as draining and hopeless. She had a second son, in 1986, but eventually packed up for the Eugene area and divorced in 1990.

“Having a child with special needs is pretty hard on a marriage,” she said. “It just fell apart.”

Both boys lived with their father at first. But Dahl joined his mother sometime in the mid-90s, Tom Dahl said. A bus picked Dahl up each morning, shuttling the growing boy in diapers off to special education classes at public school.

By the time Dahl became a teenager, his mother said she found it difficult to meet his needs. When he was 15, she asked the state to move him into a state-licensed home, records show.

Dahl’s mother said she talked to a lawyer about becoming his legal guardian and decision-maker when he turned 18. She decided against it, worried that the state might make her pay for his care.

That concern was likely unfounded. Tim Nay, a Portland attorney with 35 years’ experience in guardianship proceedings, told the newsroom that Oregon would not ask a guardian to bear the cost of providing care for an adult with developmental disabilities.

But Dahl’s mother says she didn’t know that, and his needs were immense. He has been diagnosed with, among other things, cerebral palsy, epilepsy, osteoporosis, a developmental nonverbal disorder and “profound mental retardation,” according to his medical records.

“I can’t afford to care for him like they care for him,” she said of the state system, which allocates about $525 million annually for adults with developmental disabilities in group and foster homes.

Dahl’s mother, who now bartends at a pub in the coastal city of Yachats, said she trusted his caregivers and had no reason to worry about his care.

Until the day she learned about his tumor.

The Tumor

Why did it take so long for a surgeon to move ahead with surgery for Dahl? A partial picture emerges from more than 2,350 pages of medical records his mother obtained in recent months with assistance from The Oregonian/OregonLive.

Dahl’s tumor was detected in October 2017 during one of his frequent trips to the hospital. Caregivers had noticed a brownish discharge from a special tube used to deliver medicine to his stomach. Doctors wanted to know why.

A CT scan revealed a 7-centimeter mass in his lower right abdomen.

Dahl’s primary care physician at Providence in Medford, Dr. Andrean Gurov, reviewed the case. Gurov’s notes say that the mass was “concerning” for a sarcoma, a cancerous tumor that grows in soft tissue. Sarcoma cases are rare, with fewer than 13,000 diagnosed in the United States each year.

Surgically removing a sarcoma is the only cure, according to the American Cancer Society.

“These tumors are hard to treat and require both experience and expertise,” according to the society’s website. “Studies have shown that patients with sarcomas have better outcomes when they’re treated at specialized cancer centers that have experience in sarcoma treatment.”

After the initial evaluation, a caregiver at Dahl’s group home called Gurov’s office requesting a second opinion. Gurov left a message for a medical assistant in Dahl’s file: “Does she mean a referral to a specialist?”

“Yes referral for a specialist,” the response read.

Dr. John M. Kane III, chief of sarcoma surgeries at Roswell Park Comprehensive Cancer Center in Buffalo, N.Y., said an oncologist generally would prefer to be brought in as early as possible in reviewing any case where a sarcoma is suspected.

Dahl’s tumor was nearly twice the size of a golf ball, the threshold at which Kane said the likelihood of a sarcoma starts to increase.

“And that’s when I think it’s worth having that expertise,” said Kane, who helped write national guidelines for treating sarcomas.

The records give no indication that Providence referred Dahl to a specialized cancer center or an oncologist.

Instead, the records show Gurov’s office referred Dahl to Dr. W. Brad Craft, listed by Providence as one of its general surgeons practicing in Medford.

Providence declined to say how many sarcomas Craft removed, stating only that Craft treats tumors “as a routine part of his practice.”

Craft’s notes from his November 2017 consultation say he thought Dahl’s mass could be a sarcoma but that the true diagnosis was unknown.

The tumor’s position made surgery risky, Craft noted. It was close to a muscle in the lower back and two essential blood vessels. In addition, Gurov and Craft believed surgery risked multiple complications such as kidney failure, infection, blood clots and pneumonia, according to a statement Providence provided the newsroom.

The “operation would be a major procedure and a significant ordeal for Derrick to undergo,” Providence said.

Craft outlined various options in his notes, including a biopsy to determine if the mass was cancerous. Doctors could monitor the tumor’s size over time. If it grew, other medical problems would likely follow.

“Consideration for hospice or palliative care could also be given to this patient depending on what his health care committee decides,” Craft wrote.

Craft’s notes highlighted the difficulty of treating Dahl. Although many caregivers were involved, Dahl’s doctor didn’t know the full name of the person who could make decisions on his behalf.

“It is unclear to me,” Craft wrote, “who would give legal consent.”

A Decision

The person responsible for making Dahl’s health care decisions was Kelli Lindenberg, according to notes taken by his primary care doctor and the surgeon at Providence.

Lindenberg, a former employee of Alternative Services, knew Dahl because she had worked in the home where he lived.

She subsequently told The Oregonian/OregonLive that she was “not fully 100 percent” sure she had been appointed Dahl’s decision-maker.

Lindenberg held a crucial role in the system devised by the Department of Human Services a quarter-century ago to protect vulnerable people like Dahl.

In the 1990s, state officials began moving people out of a massive state-run institution known as the Fairview Training Center, where federal authorities documented a shameful record of inadequate care. In its place emerged a system of homes statewide that today serves more than 5,800 adults with developmental disabilities.

In this new world of decentralized care, the department wrote rules to ensure somebody looked out for group home residents who had no legal guardians, were unable to make their own medical decisions and could not appoint someone else to do it.

The rules authorized a support team of caregivers, service coordinators and family members to appoint a health care representative who acts on a person’s behalf.

Dahl’s mother served in that role until 2010, when she was removed because caregivers couldn’t reliably get ahold of her, documents show.

Health care representatives like Lindenberg generally have the authority to make medical decisions. In the case of surgery, however, a health care representative’s decision must be approved by the full support team.

The rules say a health care representative can’t be an attending physician, the physician’s employee, or someone who owns, operates or works for the home where the person lives. A parent whose rights were terminated is also disqualified.

Lindenberg told The Oregonian/OregonLive she remembered signing an official form of some sort that defined her role on Dahl’s support team. But she could not definitively say whether or not she was officially named Dahl’s health care representative.

Lindenberg isn’t the only one confused.

The newsroom asked the Department of Human Services to quantify the number of people with developmental disabilities across Oregon who must rely on people like Lindenberg to make medical decisions for them.

State officials said they had no idea.

Oregon rules say every health care representative must fill out a state-approved form, or else the appointment is invalid. Under a separate provision titled “safeguards,” the person’s support team must submit facts and statistics about health care representatives to the Department of Human Services.

But the department has chosen not to request any of this information.

The Department of Human Services told caregivers to stop telling the agency whenever a health care representative was appointed. The rationale? To “eliminate paperwork and unnecessary workload” for state employees.

The department has instead outsourced oversight of health care representatives to a network of county agencies and nonprofits that examine whether people are being appointed properly. State officials say they perform quality checks on county-level work and expressed confidence that appointments are in compliance with rules. In Multnomah County, Oregon’s largest, officials say they review every health care representative appointment.

Teninty, the state’s director of developmental disability services, said it would make sense to collect data on health care representatives only if the agency had software capable of analyzing it. But records show the state legislature gave the agency $2.4 million for such software in 2013, and department officials spent all of the money on other priorities.

The department had its hand out again for the upcoming budget, warning that failure to provide $1.6 million in new money for the software will “continue to compromise the state’s ability to provide oversight.” The request did not make it into Gov. Kate Brown’s recommended budget.

It’s not clear who beyond Dahl’s health care representative was involved in deciding what to do about his tumor. The state declined to disclose names of members of his support team, although some are identified in Providence records.

Lindenberg said she could not remember meeting in person with the team, communicating instead by phone and email to discuss Dahl’s tumor.

The group was required to consider risks, benefits, alternatives and the impact a proposed procedure might have on the individual’s lifestyle. State rules also required them to consider other available information “such as a second opinion.”

Lindenberg’s memory of her conversation with a doctor at Providence is vague. But she said the doctor left her with the impression a biopsy would be dangerous. Lindenberg said she believed the tumor was, in her words, “inoperable” and that “it was going be terminal for him.”

Craft told The Oregonian/OregonLive in a statement that he explained to Lindenberg in person all of Dahl’s options. Craft said Lindenberg told him that she could not make a decision without talking first with Dahl’s support team, and someone on the team was supposed to get back to Providence.

“No additional requests were made,” Craft said.

The support team made its decision for Dahl to not undergo surgery in November 2017, according to findings from a subsequent state review.

Providence added an entry in Dahl’s medical file four months later.

“Deemed not to be a candidate for surgery or any procedure.”

His tumor was to be monitored for growth every six months.

The Intervention

Dahl’s mother said she was panicked after learning her son had a potentially deadly tumor that wouldn’t be removed. She filed a formal complaint with the state on April 24, 2018.

What she wanted was an additional doctor’s viewpoint. She wanted access to Dahl’s medical records. She complained that she felt excluded from her son’s life by members of his support team.

Pam Dahl got a response May 30. Caregivers had tried to contact her immediately after learning about the tumor in 2017, a Department of Human Services official wrote, but they didn’t have her current contact information. Dahl’s support team took his condition “very seriously” and ultimately decided not to proceed with surgery.

Prompted by her complaint, Dahl’s support team “is open to the idea of having a meeting to discuss obtaining a second opinion,” the human services official, Carolyn Sahr, wrote.

Seven months after the support team’s decision against surgery, caregivers at Dahl’s group home took him to visit a nurse practitioner who is not a Providence employee. The nurse practitioner referred Dahl to OHSU’s Knight Cancer Institute.

Dahl’s mother drove to Portland in July to meet with Dr. Kevin Billingsley, the chief of surgical oncology, who specializes in sarcomas.

“I learned that there was hope,” she said of her meeting with the specialist.

Pam Dahl said Billingsley explained that surgery was a viable option but the risk to Dahl would increase because of his condition.

She considered the alternative. She had watched her mother and father-in-law whittled away by cancer. She said she couldn’t imagine her son going through that.

“I said, ‘I’m willing to take the risk,'” she said.

It’s unclear how or when Dahl’s support team agreed to the surgery, but OHSU scheduled him to go under in November, the week after Thanksgiving. It was more than a year after the tumor was found.

Dahl’s mother was in the waiting room as Billingsley removed the large mass from his abdomen during what she said was a 4 1/2 -hour procedure. Medical records show Dahl did develop pneumonia, as Providence warned, and his mother said he required treatment in intensive care.

But after 10 days at OHSU Hospital, doctors decided Dahl was healthy enough to head home.

Search For Answers

Dahl’s mother had succeeded in getting the crucial advice that radically altered the course of her son’s medical treatment. But, afterward, she was left to wonder why the people responsible for his care hadn’t done it themselves.

The newsroom helped Dahl’s mother file formal requests with Providence and OHSU for his medical records, and with the Department of Human Services for documents the state used in assessing her initial complaint.

Providence disclosed the documents to Dahl’s mother, later saying the company conducted an “exhaustive search” of its files and could find no formal record of a designated or legal decision-maker who would need to approve her request.

But OHSU refused to release records, as did the Department of Human Services. Both said Dahl’s current health care representative, whom they would not publicly identify, told them not to disclose the records. The state said the health care representative believed disclosure would not be in Dahl’s best interest.

According to records released by Providence, Dahl’s health care representative as of December was Shelly Noon.

Noon, like Dahl’s earlier health care representative, Lindenberg, is a former employee of the company running Dahl’s group home, Alternative Services. The nonprofit said neither Lindenberg nor Noon were paid to serve as Dahl’s health care representative. Noon declined to comment.

Allen-Sleeman, the company’s executive director, said she had no say over the decision not to release records.

The state’s decision not to disclose records conflicts with assurances the state gave Dahl’s mother in May 2018.

In answering her complaint, the Department of Human Services told her that managers at the group home submitted paperwork with Dahl’s doctor “to add you to the list of people approved to see Derrick’s medical records.”

Alternative Services is “not attempting to exclude you,” Sahr, the state employee reviewing Dahl’s case, told her.

Allen-Sleeman expressed dismay that Dahl’s mother received any of his medical records.

In a series of emails with the newsroom, Allen-Sleeman argued that Providence should not have disclosed the documents and contacted the hospital to complain. She argued that disclosure violated Dahl’s right to medical privacy and told the newsroom Dahl’s mother only has “access to review” records or information, not to receive copies.

In the end, though, she agreed to talk to The Oregonian/OregonLive about decision-making in Dahl’s case. Her statements differ from the accounts of Lindenberg, Providence and Sahr, the state official who answered the complaint from Dahl’s mother last year.

Allen-Sleeman said caregivers did seek an independent medical review of Dahl’s case long before his mother intervened. In fact, Allen-Sleeman said, they asked two separate physicians to provide referrals but were “denied.” She declined to name the doctors involved.

Providence records showed a request for a referral to a specialist in October 2017, after which Gurov, the primary care doctor, sent Dahl to see Craft, the general surgeon.

The records also say Alternative Services later asked Gurov’s office to have Dahl see a cancer specialist. But that request came in May 2018, after Pam Dahl filed her complaint. The notes list Dahl’s mother as the person pushing for the specialist’s opinion. Providence replied to the request by saying Dahl needed to be seen by a surgeon before being referred to an oncologist.

Gurov told The Oregonian/OregonLive he would not stand in the way of a referral.

“I never refuse to refer patients for a second (or third) opinion,” he said in a statement provided by Providence, “because it is my belief that the patient is the center of our work and his/her opinion matters the most.”

Gary Walker, a Providence spokesman, denied Allen-Sleeman’s assertions.

“At no time was it Providence’s intent to prevent Derrick’s care team from seeking an additional opinion,” Walker said in a statement. “Any representation that Providence denied the care team an opportunity to seek care from another source is not factual.”

Aftermath

Kim Dayton, a professor emerita at the Mitchell Hamline School of Law and expert in the ethics of health-care decision-making, said the people making medical choices for Dahl should have pushed for him to see an oncologist.

“You have to do, as a decision-maker, what a competent person would do,” she said. “And that would be, in my opinion, getting a second opinion.”

Pam Dahl said she’s now taken steps to become more involved in her son’s care. She believes members of the support team have made her a member, which should give her greater access to his medical information and a voice in significant medical decisions.

But she said she received no response when she recently tried to confirm her status in writing with her son’s coordinator of services.

Meanwhile, the newsroom’s inquiries about Dahl and others in his situation prompted officials at the Department of Human Services to re-evaluate the system in place for two decades.

“You asked very good questions,” Teninty, the state’s director of developmental disability services, told The Oregonian/OregonLive. “We identified something we needed to strengthen in legislation and statute.”

Agency officials said they reviewed the rules introduced in 1996 to appoint health care representatives for hundreds of Oregon adults — and discovered state law does not explicitly authorize them.

If someone went to court challenging a health care representative’s authority to make decisions, the state might not win, said Jeffrey Dobbins, an associate professor at Willamette University who specializes in administrative law.

Dobbins said the current system “may not put the state at risk of financial liability, but it certainly could gum up the works with respect to the validity of existing appointments.”

The department last month brought forward a bill that would essentially ratify the existing process for naming a health care representative but change the title “representative” to “advocate.”

As with Oregon’s current system, the bill would not require health care advocates to receive any training. Nor would it specify what additional medical input should be sought in potentially dire diagnoses like Dahl’s.

However, Teninty said training requirements are “absolutely something we’re discussing” in the wake of the newsroom’s investigation. Mandating a second opinion is also on the table.

“I think that’s reasonable for us to discuss and consider,” Teninty said, “especially around something that might be terminal or life-threatening.”

The Future

Limited access to information about Dahl has led to one additional shock.

Dahl’s tumor apparently was not cancerous at all.

Although OHSU Hospital would not talk about Dahl’s case, records released to his mother by Providence summarize what Dahl’s OHSU surgeon discovered.

Rather than a malignant sarcoma, doctors removed a tumor considered “classic for schwannoma.” That type of mass is usually benign.

In the months since surgery, Dahl’s mother said she’s traveled twice to Medford to spend time with her son. In March, she said she spent hours playing games with Dahl and brought him a favorite treat, Lorna Doone shortbread cookies.

“I’m definitely going to be visiting more often,” Dahl’s mother said. “I appreciate that he’s still here.”

Reporter Kaitlin Washburn contributed to this report.

© 2019 The Oregonian
Distributed by Tribune Content Agency, LLC

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